is there a private sweat test in the uk pleae

[yvie]

Hi there

My little girl age 8 has been referred for a sweat test. It will take a few weeks for the test and the result, so I am trying to get it done privately. Does anyone know of anywhere we can have it done please?

I have been on the phone all morning and getting no where.
We are in Kent but I will travel anywhere.
Very many thanks
Yvie

 

[helpusfindacure4cf]

Hi Yvie,
I'm from the Uk, the Midlands, not sure why your waiting that long for the test and result maybe things have changed since my daughter was diagnosed, she is now 5 but was diagnosed at 8 months old.
We had the first test done, we had a phone cal the nest day saying it came back inconclusive they didn't collect enough sweat, so we went back the same day they did the sweat test and we waited an hour for the results, hope all is well. My thoughts are with you and your family.xx

Mom to Chelsie 5 w/cf. <img src="i/expressions/heart.gif" border="0">

 

[anonymous]

Hello there and thank you for replying and your thoughts.

The local hospital tell me that the next testing day is the 19th December if the consultant gets the request in to them in time. They only test every fortnight, and the results will be sent through to him. So with Christmas holidays and her next appointment being in February, its obviously not high on the NHS agenda in this area.

I am still on the phone, have called Gt Ormond Street who will do it but only if we go completely private from start to finish with their consultant. I am not trying to jump the queue and push in front of other nhs patients, however as there is a private sector seperate from the nhs for most other things, this would not interfere with anyone elses test, and in fact free up an appointment for someone else! Well. if I could find one that is!

The waiting is horrendous isn't it.

My thoughts are with you too.

Yvie

 

[helpusfindacure4cf]

I can see your point about the waiting it was horendous (sp)? for us having to wait an hour for the results, never mind being told that they will do a test, but not yet, give you chance to read up about CF, when really you may not have to, i'm the kind of person that has to read anything about CF but my husband wont watch anything to do with it or read any stories about it .

So what symptoms has your daughter got for them to want to do a sweat test??

We hadnt even heard of Cystic Fibrosis when the doctors said they were testing for it.x<img src="i/expressions/heart.gif" border="0">

 

[helpusfindacure4cf]

Here's a pic of me and my daughter Chelsie

Sorry it's a little small

 

[anonymous]

awww she is beautiful and apart from my daughter wearing glasses is very similar in looks. How strange.

Haylie was diagnosed with cows milk protein intolerance at 13 months, has huge amounts of mucus especially when she has a reaction, or a cold. That isnt often but unfortunately my ex husband (her daddy) gave her some chocolate recently (even though he sees her at a contact centre and is fully aware of her condition) and she had a huge reaction. I arranged to see her consultant as it was such a bad one, and as she has mild asthma and he checked the shape of her fingers, added all the symtoms up and decided on a test just in case. He is a new consultant as her previous one retired.

I have read a small amount but not too much, as the more I read the more it looks as though she has it. I have got her through her first 8 years as best I can, making sure she has the best foods she can have, vitamins etc, and lots of exercise. My eldest daughters are 28 and 25. My middle daughter has asthma as I did too, so it is no suprise that Haylie has it too. Haylie was conceived through ivf icsi, so we were told that there may be conditions not yet apparent in icsi babies.

I am still on the phone trying to organise the test. Im amazed at the lack of facilities!

Take care
Yvie

 

[helpusfindacure4cf]

Hi Yvie

Any luck with the phoning around yet?

Mom to Chelsie 5 w/cf

 

[anonymous]

Hi again
No, no luck. Have tried so many places. All over the uk. I have friends all over so I am willing to travel anywhere.Just waiting for a very nice lady at the BUPA hospital to get back to me, she is asking around, and also Haylie is part of a worldwide research project at the Royal Free into IVF ICSI births, and I have contacted the Professor for advice. He is very nice and I am hoping he will have some clue. I have spoken to him before about Haylie when her daddy left, and she wasn't coping to well, and he was amazingly helpful. So I am ever hopeful.

I will post if and when I find somewhere, so it may help others. But most people get tested a lot quicker than Haylie seems to be, from what I am told. So it is very frustrating. Its certainly opened my eyes.
Many thanks for asking, I will keep in touch.
Take care
Yvonne

 

[Marjolein]

Yvonne, have you tried the CFTrust in the UK? Maybe they can help you? This http://cftrust.org.uk is their website with a lot of information and a forum for parents and i think there is a way to contact the trust from there too.

Good luck with everything!

 

[anonymous]

Hi there and thank you for your reply.
Haylie finally had the sweat test done last friday, on the NHS, at a cancellation appointment at the last minute.
However we still havent had the results, as of today, and now they say it may be monday, but depends on whether they have the time!!!!!!
Apparently they dont do them until they have several and then do them all at once.
I am appalled at this. I have been waiting for 3 weeks since she first was referred for the test. It is bad enough waiting isnt it, without it being for this length of time. I never did find a private clinic for the test.

On top of that my father has been in for more cancer surgery, so all in all a bit of a stressful time here. Dads come out of surgery ok, but he is 81 and has bladder, prostate and bone cancer, so hes really going through it.

I am checking the site you gave me, but I have already called the CF society and they couldnt really help. I have also called a professor at the Royal Free Hospital, who is heading a research project re IVF ICSI babies, and as Haylie was conceived by IVF ICSI and is on the research project I have asked for his advice. Unfortunately, to see her, she has to be referred to him by her GP, and that still hasnt been done either, so all in all I feel the local NHS service has and is letting us down here.

Even if her result is negative, I feel I have to persue this. The nurse told me today that there just isnt enough scope to do all tests in time, a severe lack of resources.....but I think 10 days is plenty long enough, if indeed it does get done by then.

Many thanks for your replies again

From Yvie and Haylie

 

[anonymous]

Hi again

Just as an update, well, its 10 days and still no result! Despite calling the Medway NHS trust and complaining, and being told the test was being done today and they would give me the results today, they didnt get back to me.

The lady who I spoke to to complain, called me back and said that the test does take a long time to do, so I informed her that other hospitals get it done the same day and that Medway was on its own in its policy to 'store them up' till they have several. My point being what if Haylie was the only one in a month? would we have to just keep waiting? Well 11 days tomorrow, so we will see.

My stress levels are just about at screaming point, while I maintain an outward calm for the sake of my daughter as she has no idea what the test was for.

Happy Christmas to you all

Yviex